‘Kids, will you follow me up the stairs?’ We walked into his bedroom. I knew something was wrong. ‘Where is Mommy? What happened?’: HIV warrior details journey with grief, trauma

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Disclaimer: This story contains details of child abuse and neglect that may be triggering to some.

“From the little I have heard about the first couple of years of my life, my family was happy. My parents had been married a few years, having my eldest brother and me one year and four months apart. My father was from San Mateo, California and my mother was from Ringwood, New Jersey. My father worked in retail management and my mother owned and ran her daycare center. Both my parents were very sporty, as my father played semi-pro golf and my mother played college basketball. Celebrating holidays was a family tradition all the way from decorating the house to fully matching outfits for brunch.

Courtesy of Lexi Gibson

Just about everything changed on my 2nd birthday. Leading up to this day, my mother had been ill for quite some time. Weak, sick with different illnesses, and not feeling herself. She was going to the doctor constantly trying to figure out the issue. July 4th, 1993, she tested positive for HIV. My father was negative, my brother was negative, but I was positive. My mother and I were the only ones who contracted. They were unsure of how my mother got it. Along with this news, my mother was told she also had AIDS. The doctor gave her six months to live. Me? Age 13, if I was lucky.

Courtesy of Lexi Gibson

To better understand, let me explain the difference between HIV and AIDS.

HIV stands for Human Immunodeficiency Virus. It is a virus programmed to turn your fighter cells (immune system) into HIV cells. AIDS stands for Acquired Immunodeficiency Syndrome. A syndrome is a symptom.

AIDS is a symptom of HIV from prolonged exposure to the virus without medication. A healthy immune system ranges from 500 to 1800 cells. Someone is diagnosed with AIDS when their fighter cells are at 200 count and below. When the virus depletes the fighter cells to 200 or below, your body has no immunity against the bacterias and viruses humans come in contact with regularly. This creates a high risk for death. I call this AIDS zone. HIV is the virus and AIDS is a state at which your immune system is at. You cannot pass AIDS. You pass HIV.

My family was devastated. My mother and I began antiviral medication in hopes to prolong our lives. Shortly after, my Grandma Del, my mom’s mom, moved in to help out. My father worked 12-15 hour days to provide for our comfortable lifestyle, while my grandma helped care for my mom, my brother, and me. We lived in a newer, two-story house in Santa Clarita, California on a 6,000 square foot lot.

Courtesy of Lexi Gibson

At this time, my mother and I were taking about 36 pills 3 times a day. Most of my meds for the first few years were given to me crushed into foods or in liquid form. The worst part about having HIV was not the virus itself, it was the side effects of the medication. You feel wonderful with HIV, until one day you don’t. You don’t feel the virus depleting your immune system. This is why I didn’t want to take my meds. I felt so much better without them, but I didn’t understand I would only feel good for so long. I didn’t understand why I had to feel horrible to live. But it was the only way.

Courtesy of Lexi Gibson

Some of the symptoms I experienced daily were fevers, rashes, hot flashes, headaches, room spins, hallucinations, night sweats, throwing up, nightmares, throwing up, feeling glued to the bed, and did I say throwing up? Life was nearly impossible for me most of the time. I cried often, begging to feel better. UCLA hospital was my second home. I was constantly in breathing treatment chambers to prevent phenomena, and I had blood transfusions and IV’s twice a week. The medicine was in trial and error stages. There were no avoiding side effects at this time.

One of the few memories I have of my mother was April 16th, 1996. I was unintentionally woken up by commotion coming from the house. I snuck into my brother’s room and climbed into bed with him. I woke him up and said, ‘Ty, something is going on.’ We got up and left his room to check it out. We got to our parent’s bedroom door, about to open it when my grandma came around the corner up the stairs. ‘What are you doing up?’ She asked.

 ‘What’s going on? Is Mommy okay?’ We asked. Grandma told us everything was fine and walked us back to our rooms. I felt scared and snuck back into my brother’s room to go to sleep.

In the morning, we woke up to the oven on and ready to warm our hands, and french toast hot served as nothing had happened. Grandma took us to school and brought us back home at the normal hour. As soon as we got home, my father asked my brother and me both if we would follow him upstairs. As soon as we walked into his bedroom, I knew something was wrong. The bed was made, mom was gone, and so were her medical supplies.

 ‘Come here kids,’ he sat and then patted on the bed. ‘There is something I would like to talk to you about.’

 ‘What is it? What happened? Where is Mommy?’ We both exclaimed.

 My father looked at us both with pain in his eyes, followed by so much strength, ‘Mommy went to heaven,’ he said.

I lunged myself into my father’s arms, immediately crying while my brother jumped up to the middle of the bed, putting his arms in the air, and repeatedly crying out, ‘Mommy, Mommy come back!’

Courtesy of Lexi Gibson

As an adult, I learned my mother passed away in my father’s arms around 4:30 a.m. I was 4 and a half years old. My mom lived 2 years past her death date. A fighter she was. She passed away because the meds weren’t very effective and her immune system was already depleted by the time she found out about having HIV, so her body was not able to function properly or fight off common infection. She was in pain and tired of suffering. She went peacefully with pain medication.

After my mother found out she had HIV, she became an activist. She began speaking out in her community about HIV and it’s lack of discrimination toward humans. At the time, HIV was seen as the gay man’s disease or generally among black people. As my mother said on ABC’s Mike and Matty, ‘Doctors said I didn’t fit the part. Straight, female, and caucasian.’ My mother wanted people to know anyone can contract HIV and to please get tested. She continued to be a powerhouse, raising awareness, despite the discrimination she was facing from the local community.

Even though Magic Johnson debunked the myth of spreading HIV through sweat and saliva in 1991, many still feared people with HIV. I began facing HIV discrimination after my mother died. My first memory is from preschool. During nap time, I didn’t have a blanket or pillow and the staff refused to give me one for fear of contracting. I was cold, so I used my sweater as a cover. I put my legs through the arms and I remember them standing from a distance, watching me while laughing.

Courtesy of Lexi Gibson

Little did I know, this was only the beginning of my personalized harassment. Elementary school is where it began daily. I had my own bathroom, water fountain, and corner of the classroom. If I spit, I was sent home. If I bled, I was sent home. I was not allowed to play with the other kids, and my only friends were the cafeteria ladies. They didn’t speak English, but they always said hi to me and snuck me popsicles. They helped me feel somewhat normal.

Over the summer of 2nd grade going into 3rd, my father decided it was time for us to leave Santa Clarita. He wanted a fresh start for the whole family. We moved out of the house my mom passed away in and we got away from the segregation and discrimination. So we thought. We moved to San Marcos, California. We left the Los Angeles area for the San Diego area.

Shortly after moving, I made new friends. They found out I had HIV during our sleepovers. Soon enough, the whole school knew. This group of kids bullied me from 3rd to 9th grade. I did have a few solid friends over the years, but even they would act funny sometimes. Because who wasn’t embarrassed to be friends with ‘Lexi Gibson, the girl with AIDS.’ In 7th grade, I ate lunch every day with my science teacher in her classroom. She was my only sense of serenity that year.

Courtesy of Lexi Gibson

I experienced shoving huddles where I was the kid in the middle of a circle and everyone threw me as hard as they could to the next person. If I ever asked questions for clarity in class, everyone laughed at me, calling me stupid. I went to receive an award in class and was tripped, falling face down. The whole class laughed. I even had my own graffiti. ‘Lexi has AIDS’ was written on the outside of my science class door. One year, I was chosen during an assembly to play games to win money for our school fundraiser drive. As I walked up to the stage, the whole auditorium of kids booed. I ended up not finishing and going back to my seat to stop the booing. I silently cried and wanted to die. During class, pennies, paper wads, and gum wrappers were constantly thrown at me. I was told I was ugly, a freak, disgusting, no one wanted me, and to go die, just about every day. One day, I was eating lunch alone when a girl I didn’t know a grade above me, came up behind me, grabbed my ponytail, and started slamming my head into the umbrella pole and table. Everybody watched and laughed. My whole life felt like a nightmare with daily humiliation.

While the bullying continued at school, I was also getting beat up at home by my brother. Our relationship dramatically shifted after my mother died. As time went on and we got older, it only got worse. He grew stronger and so did his hate for me. He constantly told me whether at school or home, ‘I hope you die of AIDS.’ He would spit on me, push me, punch me, drown me, hold knives to me, and one time, he punched me so hard in my gut walking by me in the hallway, I dropped to the ground gasping for air, silently screaming in pain. From what my grandma Del had told me as an adult, my brother grew bitter toward me because the attention was all on me growing up. Everything was always about Lexi. Then, kids at school started accusing my brother of having AIDS, so to avoid the bullying altogether, he denied being my brother. He joined in on the bullying, and most of the time, watched. When he spit on me, it was usually in front of other people.

Courtesy of Lexi Gibson

At this point, I hated my life. I hated myself and I began to hate everyone in it. I was angry at my mother for leaving me with HIV to be hurt by these horrible mean people, I was angry at my father for not protecting me, and I was angry at my brother for not loving me. I felt like a burden. I was the problem child. I felt like a freak. I felt unwanted, unlovable, ugly, stupid, and I couldn’t do anything right. Not only did I cry myself to sleep every night wishing I could wake up and my reality would all just be a dream, but I fought sleep because I feared not waking up.

Around five years old is when I first thought, ‘I am going to die like mom?’ I feared death and the treatment of others every single day. Every time I got an illness, my father feared for my life, and I followed. He did the best he could to hide his fear, but I could hear it in his voice when he would beg me to take my medicine. I refused any meds as often as I could, unintentionally creating an emotional and physical war for my father and me. When I would have a 105 fever, he could barely get me to take chewable Tylenol.

I will never forget one night my father went back and forth for hours, trying to get me to take my meds. I was 7. Somehow we ended up on the floor, in the doorway of my room. He cradled me in his arms, crying, begging me to take my medicine. He pleaded, ‘If I could take them for you, I would. Please, please baby. Please. I don’t want to lose you like I lost your mother.’ Words I will never forget. I saw the emotional pain my father felt every single day. He lost the love of his life in his arms, and every day didn’t know if his daughter would go too. He stayed strong, went to work, and loved us the best way he knew how.

Courtesy of Lexi Gibson

Although my father was a great provider, he lacked nurturing love. He was raised in the 40’s and 50’s when the men worked and the women stayed home with the children. After my mother died, my father was unsure of how to nurture us emotionally. I constantly craved attention from him, especially because he worked so much. I did anything to be in his presence. I learned to play golf, video games, which I hated, just to be able to connect and spend time with him. One of my favorite memories of us is every time we were in the car, he blasted Cat Stevens’ Tea for The Tiller-man album, and he would sing to me. Loud and proud. It is still one of my favorite albums to this day. I know every word.

My father was not an emotional man and struggled with patience—mostly because he had a whole life of unprocessed trauma and my brother and I tested his limits on the daily. He never talked about my mom, and when I would ask, he would choke up and change the subject. My father and grandmother’s way of parenting was ridged and cold. We were told to do things versus being asked. We were talked down to when we made mistakes. ‘What’s wrong with you!? Why did you do that? How many times do I have to tell you? Are you stupid!?’ We were told to go to our room and not to come out until we were done crying. Punishment came from the belt, coat hanger, and open hands. My grandma was the queen of throwing things at us, then chasing us after. The lack of patience and love in our home added to my painful living and only made me want to die that much more.

When I was 11 years old, life got a bit brighter. One year on Thanksgiving, my father brought a woman home to join us for dinner. She was witty, funny, pretty, and could potentially be my mom! I was all in. I wanted nothing but motherly love. She started to come around more and one of our favorite things to do together was get our nails done. She was so cool and I absolutely loved her, until she moved in.

When this woman moved in, everything changed. Not only did she rearrange the furniture and the cupboards to fit her liking, but she put a lock on the garage fridge and freezer, and made us ask permission to eat at all times. Her attitude switched up and she talked with an evil voice when my father was not around. She was condescending, demanding, and volatile. One day, my father stood up for us kids and she packed her bags to leave. She was on the way out when my father begged for her to stay. She walked back into the house, and since then, my father never said anything to her again regarding us kids. She became the main disciplinarian that day.

I am pretty sure my father knew, to an extent, how she was. Or why else would he secretly sign my detentions and referrals? I got detentions almost every day for acting up in school and referrals followed as my detention count went up. One of the punishments from my stepmom was grounding. If I got a detention, talked back, missed a crumb on the counter while cleaning, or anything else wrong, I was grounded. Grounded meant no phone, no television, no music, no nothing other than books and a notebook and pen in my room. I had 3 bathroom breaks, and if I abused my privilege, she would add another day. If she left the house and I was in my room, she put a pencil on my door handle to know if I came out or not. So, to avoid grounding, my father signed everything on the low. We didn’t talk, I just handed him the paper and he signed.

When it came to my father and me, my stepmom seemed threatened by our relationship. I wasn’t ever allowed to be alone with him, so no more singing Cat Stevens in the car. I was not allowed to sit next to him on the couch because, ‘Excuse me, that’s my spot,’ she would say. What I did have with my father prior to her, ended.

My father and stepmom ended up getting married, so I knew she wasn’t going anywhere. Taking my medicine was already hard enough for me, but my stepmom made it much more miserable. If I was taking too long to build up the courage to swallow my pills, she would grab me, plug my nose, and try shoving the pills down my throat. I would throw them up and she would shove the slimy thrown-up pills back down my throat.

Courtesy of Lexi Gibson

My long-term grounding started after my 13th birthday. I was sent away for the summer to stay with my eldest half-sister, Melody, in Albuquerque, New Mexico. Toward the end of the stay, I was spending my days with my sister’s girlfriend’s uncle. He had a roofing company, so I hung on the roof while he finished his jobs. A couple of days prior to me going back home, he molested me in his car while driving back from Sonic. When I got home, I told my sister and her girlfriend. In the morning, I woke up to the man who abused me standing in the living room. Hysterically crying he asked, ‘Lexi, how could you? I loved you! How could you do this to me?’ He asked.

I stood there looking down with my arms crossed feeling betrayed, sick, and unsafe. My sister was yelling at me and told me to go to my room. They locked me in my room for two days until I flew home. When I got home, I was humiliated by my parents and asked, ‘How could you do that? You lied and embarrassed our family.’ I was grounded for 3 months after my sexual abuse. And the grounding didn’t end.

Not too long after coming home, I went on strike from my medicine. I was tired of being sick. I was tired of fighting. I was tired. I told my parents I was no longer taking them anymore and I didn’t care if I died. I did not want to suffer anymore. Following my announcement, my father and stepmother told me if this is my decision, that’s okay, but I was going to die. They planned my funeral, gave me a journal to write in daily, ‘So they had something of mine after I died,’ and they held me on the couch while we all three cried our goodbyes.

A few months following my death party, my father was diagnosed with lung cancer. This was another tragedy to our family because my father was convinced he was going to die. So here we are, as a family, crying because dad was dying. I went to my room thinking, ‘Now dad is going to die too? Why me?’ I had so many questions and fears. My father’s lung surgery was set for September 9th, 2005.

Courtesy of Lexi Gibson

Following the tragic news, a chain of events led to what I thought was the worst thing to ever happen to me. 14 years old now, one morning prior to school, my stepsister and I got into an argument. My stepmom got in my face and said, ‘Get your walking shoes on and walk your a** to school.’ She took my brother to school, but left me. So, instead of walking to school, I walked to my friend’s house to see a mother figure of mine who was a therapist. I told her what happened and she said, ‘Enough is enough.’ She took me to see the school counselor to report the abuse at home. I didn’t want to go home that night, so the school officer and counselor watched me as I left a message on my home phone stating, ‘I need time to cool off. I am staying at the Chester’s tonight and I will be in school tomorrow. I am coming home tomorrow night.’ I went home with the Chesters and went to class the next morning.

I was sitting in first period when two school officers came into class. They both asked me to follow them. I was led to an actual police car where I was arrested for running away. I thought, ‘A runaway goes to school?’ When I was being questioned by the officers. I told them how crazy and mean my stepmom is. ‘Please, please don’t let me go back with her,’ I begged. I was put into a holding cell alone where the door closed on my ring finger and broke it. Soon after, I saw my stepmom and stepsister coming in. Anxiety flooded my body. Any time I was around her, my nerves stayed in panic mode.

She took me to the car and wouldn’t tell me where we were going. We pulled up to a mental hospital. Yes, a mental hospital. I thought we were going for her, but sure enough, it was for me. She lied to the doctors, telling them I throw knives, hurt animals, cut myself, and I am dangerous. I was so livid I started ripping my clothes off to prove to them I hadn’t hurt myself. I told the doctors to please believe me and not her. The doctors did not have evidence to admit me, so they let me go with some behavioral meds along with a diagnosis of ODD. Oppositional Defiant Disorder.

Later that Friday evening, I was taken to my grandmother Del’s house in Oceanside, California. She moved out of our house in 3rd grade after we moved to San Marcos. I spent the weekend with her, and I definitely did not take the meds I was given, nor did my grandma make me. I went back home late Sunday and got ready for school Monday morning. About to put some eyeliner on, I opened my makeup bag to find tangled up jewelry. My jaw dropped. I began to cry. It was my mother’s personal jewelry. He would show me and put it on me whenever I asked before my stepmom came. She stopped it, of course.

Courtesy of Lexi Gibson

I left my room to show my father what I had found and he was instantly upset. ‘Where did you get this?’ He asked distraughtly as he pulled out the tangled pile from my black bag. He looked so sad. I told him what happened and he turned to my stepsister and asked if she knew. She said no and when my father looked away, she smirked at me. I instantly knew it was her or her mom. I was so mad because I knew they were trying to set me up again. My stepmom was already at work which was odd because my dad usually left first.

After I came home from school, I was told that my father would like to speak with me when he got home. I anxiously awaited his arrival in my room. I mean, where else would I be? I was still grounded about a year in. And then, I heard the front door slam. All I could think was, ‘I hope he believes me.’ Five minutes later, my father comes into my room and instantly starts accusing me. We both begin yelling back and forth, with me repeating, ‘I didn’t do it. It wasn’t me.’ He left the room and came back in yelling, left again, and came back in yelling. The 3rd time he came in to say, ‘You’re so stupid. You’re just like your mother. You have sex, do drugs, you’re worthless.’ I screamed back, ‘How can you believe her over your own daughter!’ His words engraved into my mind. Becoming my newest slogan on repeat whenever I made mistakes. Despite none of it being true.

After my father left my room, I began hysterically crying. I felt heartbroken, betrayed, alone, unwanted, unimportant, tired, and all of these emotions came out in anger. Throwing my decorative pillows onto the floor angrily while talking aloud, I said, ‘I hate you. I hate you so much. How could you? I hope you die in surgery.’ My bedroom door flew open and there was my stepsister standing there. 19 years old. ‘You stupid b*tch! How could you say that about our father!? I hope you die of AIDS! I’m telling Dad!’ She yelled as she ran off to tell my father.

A few seconds later, my father came into my room. I was standing in the center where he walked right up to me. Just about chest to chest. 6’4, towering over me, my father looked down at me and softly said, ‘Is that how you feel?’ I didn’t answer. ‘Is that how you feel? He asked again. I didn’t answer. In my mind, I was screaming, ‘NO! NO, I don’t want you to die, I just want you to love me!’ But my ego didn’t stand down. He asked again. ‘Is that how you feel?’ Silently, I shook my head yes. ‘Alright well, pack your bags. Tomorrow you’re out of here and you’ll never have to see me again.’ He walked out and shut the door.

Honestly, I felt a wave of relief flow through my body. Was I finally leaving this chaos? Anywhere is better than here, I thought. Sure, I was sad, but I was more ready to escape my nightmare. My father brought me a suitcase and told me to pack it up. In the morning, he drove me to Oceanside, California where we pulled up to a group home called Project Oz. We had a meeting with the counselor prior to my father leaving and he listed all the reasons why they could not keep me anymore. All behavioral. As we were finishing up the intake, he turned to me and said, ‘Oh, by the way, that motion sensor in your room? Yeah, wasn’t a sensor, it was a camera. We’ve been recording you for three months.’ I immediately popped back, ‘Oh yeah? Well, why don’t you show me the footage of me taking mom’s jewelry from your 24-7 locked room and hiding it in my room to set my stepmom up?’ He said nothing and looked away. No one has ever seen the footage, to this day. And that was that. My father left and he never came back…”

This is a two-part story. Read part two of Lexi’s journey to healing and self-love.

Courtesy of Lexi Gibson

This story was submitted to Love What Matters by Lexi Gibson of Las Vegas, Nevada. You can follow her journey on Instagram, Youtube, and her blog. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read part two of Lexi’s story:

‘The doctor pulled her aside. ‘If you don’t take her in, she will go to a group home, and she will die.’ Diagnosed with AIDS, my organs were shutting down. I was 2 years past my death date.’: HIV warrior adopted by sister’s boss after life-long abuse, ‘I am no longer a victim’

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